Patterns of HIV Disclosure and its Impact on the HIV Care Continuum Among Black Men who Have Sex With Men in South Carolina

Abstract

Addressing the psychosocial concerns of Black men who have sex with men (MSM), such as HIV disclosure, is critical for effective HIV treatment efforts. Black MSM living with HIV experience multiple psychosocial challenges, such as “triple stigma” due to their sexual orientation, racial minority status, and HIV status, which hinder their HIV disclosure and subsequent HIV care-seeking behavior. Our study sought to examine the HIV disclosure patterns and their impact on the HIV care continuum among Black MSM using a qualitative approach. Semi-structured interviews were carried out among 28 Black MSM aged ≥18 years old living in South Carolina. A thematic analysis process was employed for data analysis. The emerging themes of facilitators of HIV disclosure included the sense of personal responsibility to disclose one’s HIV status within the context of a relationship and having other family members living with HIV, while the barriers included fear of family rejection or religious reasons. A few participants preferred to disclose to friends due to the less shame in sharing their status to friends than other confidants (e.g., family members). HIV disclosure was found to be a facilitator for linkage to care and retention in care through social support obtained from disclosure confidants. Helping patients to identify a single person (e.g., family member) to share their HIV status may offer equivalent benefits to wider disclosure. Interventions occurring at multiple levels (e.g., targeting religious groups) and within multiple contexts are needed to promote HIV disclosure and improve clinical outcomes in the Black MSM community.

Introduction

In the United States., men who have sex with men (MSM) represent about 2% of the U.S. population (U.S. Centers for Disease Control and Prevention, 2010) but account for 56% of the 1.1 million people living with HIV (PLWH) and more than two-thirds of all new infections in 2019 (Centers for Disease Control and Prevention, 2020). In the meantime, the U.S. HIV epidemic is characterized by profound disparities in HIV prevalence and outcomes for Black Americans. Black MSM living with HIV, particularly those reside in rural areas, are the group most severely affected by HIV and reported to have worse care outcomes than other MSM (Singh et al., 2017). It is reported that each step of the HIV care continuum (Gardner et al., 2011) is marked by racial disparities—those between Black MSM and White MSM (Millett et al., 2012). Black MSM living with HIV have the least favorable care and treatment outcomes of all MSM (Singh et al., 2017). The national HIV care continuum estimates reflect that among all U.S. MSM, Black MSM as a group have the worst clinical outcomes, measured in terms of linkage to care, retention in care, and viral suppression (Singh et al., 2017).

Among all the other factors, HIV disclosure is a crucial step for PLWH to actively manage HIV/AIDS. HIV disclosure not only allows sero-discordant partners to take measures to prevent HIV transmission, including seeking HIV testing, using pre-exposure prophylaxis (Brooks et al., 2011), but is also beneficial to the individuals who initiate the disclosure, including social, physical, psychological dividends (Serovich et al., 2008), such as social support, better access to HIV treatment and care, increased opportunities to discuss the reduction of HIV risk with partners and reduced psychological distress (World Health Organization, 2004). However, disclosure of HIV status and decisions as to whom one should disclose to are complex, especially for persons living in the Black communities with high levels of HIV-related stigma (Clark et al., 2004; Emlet, 2006). Black MSM living with HIV may be susceptible to “triple stigma” due to their racial minority status, sexual orientation, and HIV status; this is a critical issue because this can be a barrier to HIV disclosure (Riono & Muhaimin, 2021) as well as posing additional barriers to seek HIV care and treatment services.

HIV disclosure patterns can vary by gender, race/ethnicity and HIV risk group, and an earlier analysis found that Latina and African American women disclosed their HIV status to more network members than Latino and African American MSM (Wohl et al., 2010). In addition, a study of Latino MSM found higher rates of HIV disclosure to main partners and friends and lower disclosure rates to parents (Zea et al., 2004). The impact of HIV disclosure on HIV care continuum outcomes among Black MSM has rarely been examined. The non-disclosure of HIV status could potentially account for the cascade disparities among Black MSM. A systematic literature review reported that fear of HIV disclosure is the second most commonly cited category of barriers to linkage to HIV care and uptake of ART (Govindasamy et al., 2012; Medley et al., 2013) and increased HIV disclosure was found to be associated with greater retention in care among MSM in the United States (Elopre et al., 2015; Halperin et al., 2013; Hodgson et al., 2014; Wohl et al., 2011). HIV disclosure was also associated with increased odds of engagement in care and initiation of ART among MSM (Anderson et al., 2018).

Unfortunately, there is a limited understanding of the HIV disclosure pattern in Black MSM, particularly in the Southern States. There is also a dearth of empirical data regarding whether and how HIV disclosure affects different stages of HIV care cascade (e.g., linkage to care, ART coverage, retention in care, or viral suppression) among this highly marginalized population of MSM (Daskalopoulou et al., 2017; Hirsch Allen et al., 2014). To address the knowledge gap, our study aimed to characterize the patterns of HIV disclosure and describe its effects on the HIV care continuum among Black MSM living with HIV in South Carolina (SC) using a qualitative approach. The proposed project will address a significant knowledge gap by engaging in a systematic evaluation/synergy of current practices of HIV disclosure and their impact on HIV care cascade among Black MSM. This qualitative study will provide some new insights and advance the understandings of such issues in the context of rural area in the South. Findings of this study will also generate evidence for the design of culturally appropriate disclosure interventions for Black MSM to promote better clinical outcomes in the future.

Methods

Participants and Recruitment

Between January and April 2019, qualitative interviews were conducted among 28 Black MSM in SC. Inclusion criteria for the participants were (a) men aged ≥18 years old, (b) Black or African American, (c) men who had anal sex with at least one man in the last 6 months prior to the survey, (d) confirmed HIV positive for more than 6 months prior to the interview, and (e) living in SC during the study period. Given the nature of this hard-to-reach population, the recruitment was predominantly done by word of mouth. Around 60% of the participants were contacted via phone calls and text messages and recruited by the interviewer, who is a “gatekeeper” of the Black MSM community (i.e., a community health worker). The remaining 40% of the participants were (romantic) partners or close friends of the individuals the reviewer recruited who were told about the project via the participants themselves. Potential participants were asked a few questions over the phone to ensure that they met the study inclusion criteria. Once we confirmed the eligibility of the prospective participants, an in-person interview was scheduled with the interviewer in a private room at a local community-based organization with informed consent. The study protocol was approved by the relevant Institutional Review Board (IRB) (IRB #: Pro00089263).

Data Collection and Analysis

Participation in this study was anonymous and voluntary. Participants were given an invitation letter describing the study’s objectives, anonymity protections, and data security. The interviews were semi-structured with pre-set open-ended questions. The interview lasted 1 to 1.5 hours and were facilitated by a co-author (T.B.), who has been working in the HIV-specific community-based organization for many years. Responses were recorded using two recorders to prevent any technical issues. Written informed consent was obtained from all participants. An incentive of $35 USD was offered to compensate for participants’ time and efforts.

The disclosure process theory and the consequences theory of disclosure models were used to develop the interview guide (Chaudoir & Fisher, 2010; Chaudoir et al., 2011; Serovich et al., 2008). Disclosure processes model is a framework with which to examine when and why interpersonal disclosure may be beneficial, examining the timing of the disclosure and the disclosure outcomes (respect to different disclosure confidants) after disclosure. It advances disclosure theory and identifies strategies that can assist disclosers in maximizing the likelihood that disclosure will benefit well-being (Chaudoir & Fisher, 2010). The consequence theory of HIV disclosure suggests that the relationship between disease progression and disclosure is moderated by the consequences one anticipates resulting from the disclosure (Serovich et al., 2008). That is, as the disease progress, stresses accumulate which result in the need to evaluate the consequences of disclosure. Persons with HIV are likely to reveal to significant others and sexual partners once the rewards for disclosing outweigh the associated costs. Guided by these theories, we asked both the positive (rewards) and negative (costs) experiences of HIV disclosure process. The positive experience includes obtaining social support, improve HIV treatment adherence; the negative experiences include family rejection, disincentives to accessing ART, missing doses or treatment interruption (See Supplementary Table 1). Participants then completed a one-page survey to collect demographic information, recent CD4 counts and viral load, and partner/relationship status data. The interviews were recorded, transcribed verbatim in English, and checked for accuracy. Any identifiable information was de-identified in the final transcripts. The research team discussed the content of interviews and coding framework, followed by three coders who independently coded the data and summarized the emerging themes. The research team then reviewed and recoded the initial codes into major themes for the study.

The NVivo 11.0 was used for the analysis. An open coding structure was iteratively developed and refined over multiple discussions between research members to resolve discrepant interpretations. Qualitative analysis was conducted using a thematic analysis approach comprising discussion of initial thoughts and main concepts, identification and reconciliation of codes, and naming of emergent themes. The research team members assessed inter-rater reliability and refined subthemes for several transcriptions. Discrepant interpretations were discussed and resolved by revisiting the reference in context, attaining consensus on the predominant subtheme described in a given reference, and further refining the conceptual definitions in light of illustrative examples of each subtheme.

Results

Demographics of the Participants

Table 1 presents the socio-demographic characteristics of the 28 study participants. Their ages ranged from 24 to 68 years (M: 40 years, SD: 12.5 years). About one-third of the participants (n = 11) attended college or some university. Of the total sample, 60.7% (17/28) had a regular sexual partner living with HIV. The majority of the participants were single (n = 21) and employed full-time (n = 15). The median most recent CD4 count was 782 cells/mm³, and most had an undetectable viral load (n = 26).

Table 1.

Socio-Demographics of the Participants

Items	n (%)
Age (M, SD)	40 (12.5)
Ethnicity a
Hispanic or Latino	1 (4.3)
Not Hispanic or Latino	19 (82.6)
Other b	3 (13.0)
Highest education level
Less than high school	3 (10.7)
High school	5 (17.9)
Some college/university	11 (39.3)
Bachelor’s degree or above	9 (32.1)
Marital status
Single	21 (75.0)
Unmarried cohabitating	6 (21.4)
Married/remarried	1 (3.6)
Employment status
Employed full-time	15 (53.6)
Employed part-time	5 (17.9)
Unable to work for health reasons	5 (17.9)
Others	3 (10.7)
Annual income (USD)
less than $10,000	10 (35.7)
$10,000–$24,999	5 (17.9)
$25,000–$49,999	12 (42.9)
$50,000 or above	1 (3.6)
Regular sexual partner living with HIV
No	8 (28.6)
Yes	17 (60.7)
Don’t Know	1 (3.6)
Don’t have a regular sexual partner	2 (7.1)
Regular sexual partner knows of HIV status a
No	1 (3.7)
Yes	26 (96.3)
Length of time in relationship after disclosing a
<1 year	12 (46.2)
1–5 years	5 (19.2)
>5 years	9 (34.6)
Most recent CD4 count (cells/mm3)
Median (IQR)	782 (513,75)
<200	1 (3.6)
200–350	2 (7.1)
>350	17 (60.7)
Unknown	8 (28.6)
Most recent viral load
Undetectable	26 (92.9)
Detectable but <100 copies/mL	2 (7.1)

Note. SD = Standard deviation; HIV = human immunodeficiency virus; IQR = inter-quartile range.

^aThe total number does not equal to whole sample size due to missing data.

^bOther: identified as other ethnicities.

Disclosure Patterns

Disclosure to Sexual Partners

Theme 1: Build Trust for the Long-Term (Romantic) Relationship

Some participants (n = 5) tend to let their sexual partners know their HIV status “upfront” at the beginning of a relationship and do not want their partners feel “betrayed.” They described disclosure to sexual partners as a responsibility only within the context of a steady sexual relationship or when trying to establish a relationship:

I feel like it’s important to let them know upfront. And that way, you give them an option because when you take it away from people, they feel like you betrayed them. . . so I think the best thing to do is when you first meet someone if you don’t bring it up that day, bring it up in the beginning of the relationship. (39-year-old African American)

Theme 2: A Sense of Personal Obligation and Responsibility to Protect Others

A few participants reported not having disclosed their status to anyone, and others strongly believed in the responsibility to always disclose to all sexual partners. One participant shadowed from his own experience of contracting HIV. He demonstrated empathy from his own experience, would like to give his partners the “option” and felt obligated to disclose to others as such a communication would help both of them take steps to keep healthy:

. . . it is always your job to protect yourself. But if that person would have told me I would have not slept with them, I just would have used protection. And so because I was not given that option, I give my partners that option. (33-year-old African American)

Theme 3: Exclusive or Stable Relationship as a “Double Sword” for HIV Disclosure

Some participants do not deem it necessary to tell his partners other than those with whom he had an exclusive relationship. Disclose HIV status to only (close) partners sometimes provided emotional support after their diagnosis for some participants while for other participants, they got negative responses:

I knew my partner status. He knew mine. And we’d had a long-term relationship, 13 years so I didn’t have to go back and forth telling somebody or dating somebody. (52-year-old African American)

Disclosure to Family

Theme 1: Having Family Members With HIV as a Facilitator for Disclosure

Although it might have taken a long time for some participants to disclose their HIV status to family members, most of the participants who disclosed to family members (e.g., father, brother) had family members living with HIV, who could understand them and became their “support system,” relieving their emotional burden and providing tangible support to them:

So, when I found out, I told my mom, my dad, my sister, and my nieces. So, that was my support system immediately. So, I didn’t have to go a week or two without anybody knowing my mom, dad and sister knew the same day I found out. (30-year-old Gay African American)

Theme 2: Fear of Family Rejection or Religious Reasons for Non-Disclosure

Some participants were afraid to tell their family members because of the fear of family rejection or religious reasons. Some participants received negative responses after disclosure. In one instance, a participant said he disclosed his status to his mother, and she “freaked out” and blamed him:

I told my mom because it was like before she see it on Facebook. I’d rather tell her this now, so I caught my mom and I told her, I got some news. I was like, I went to the doctor. . . I’m positive . . . because [when] my mom hears certain news, she kind of freaks out. Like, you know, she starts to talk to me like, I’m still five. Like why didn’t you do this and why didn’t you do that. (46-year-old African American)

Disclosure to Friends

Theme 1: More Comfortable to Disclose to Friends Than Other Confidants

Some study participants (3 out of 30 participants) felt comfortable disclosing HIV status to their friends rather than their family members (“did not necessary”) because they felt no shame in sharing their status. However, some participants took some time before telling their friends due to their comfort level:

I haven’t experienced any negative situation by saying I’m HIV positive. I think people actually are intrigued that I’m actually able to say it with no shame. Now, when I did come out and say I was I didn’t necessarily disclose to my family when I tested positive; I disclosed to my best friends because I needed somebody to know. (33-year-old African American)

Impact of HIV Disclosure on HIV Care Continuum

HIV Disclosure as a Facilitator for Linkage to Care and Retention in Care Through Social Support Obtained From Disclosure Confidants

Linkage to Care

Among the study participants, three reported that disclosure of HIV status to partners or family members facilitated the linkage to care process. The first participant stated that disclosure helped his partner link him to care by accompanying him to the clinic. The second participant said that he was able to encourage his sexual partner(s) to link to HIV care after he disclosed his status to them. Finally, the third participant mentioned that he received support from his mom, who helped him link to care after he disclosed his status to her:

He (my partner’s friend) took me to the clinic. The clinic was in xxx xxx. and he took me there, and it was just, you know, and that partner friend did not let me sit there, he would be like, snap out of it. (32-year-old African American)

And you know by my mom knowing about my status, luckily, you know, been in nursing field she had heard of what you know, I paid Dr. <name> senior was like the first one in South Carolina that was doing HIV. So she knew about Dr. <name>, so she linked me into Dr. < name >Junior. And I went to Dr. <name>, and I’m telling you, I’m telling anybody to this day, Dr. <name > and <friend> saved my life. (49-year-old African American)

Retention in Care

One participant stated that his mother encouraged him to continue in care by coming along with him to see the doctor whenever he had an appointment in the clinic, thereby facilitating his retention in care:

My mom started coming to the doctor with me, you know, come and check on me. I would go to her house, or she would come by and check on things like that. (50-year-old African American)

Discussion

The findings in this project provide insight into how Black MSM decide to whom to disclose their HIV status and how HIV disclosure status affect HIV care continuum among Black MSM living with HIV in SC. From the results of our study, Black MSM are most commonly disclose their HIV status to stable sexual partners and family members, while a few of them prefer to disclose to friends. Based on different disclosure targets, the perceived costs of disclosure may vary (Kalichman et al., 2003). The participants’ disclosure patterns were influenced by the perceived benefits or consequences, the disclosure target’s status (e.g., HIV positive family members) or relationship (e.g., exclusive partnership), and how comfortable they were with their disclosure target at the time of disclosure.

Regarding HIV disclosure to sexual partners, the facilitators among this population included the motivation to build trust in a long-term relationship, the sense of personal obligations and responsibilities to protect partners from contracting HIV or having exclusive relationship with partners. The sense of personal responsibility to disclose one’s HIV status within the context of a relationship, but not necessarily to casual partners, have been documented in many studies (Gorbach et al., 2004; Harawa et al., 2006). Nevertheless, because of perceived community norms regarding disclosure or fear of rejection from potential sexual partners, disclosure was generally limited to exclusive or steady sexual partners with who participants anticipated or had an ongoing sexual relationship.

In terms of disclosure to family members, having other family members living with HIV is a facilitator while fear of family rejection or religious reasons are the barriers of HIV disclosure. The few participants who prefer to disclose to friends is because of the less shame in sharing their status to friends than other confidants (e.g., family members). We observed that disclosure to family members would always be able to obtain social support, which could improve their HIV care outcomes. These findings may suggest that Black MSM might have strong emotional bonds with their family members and may lead to better HIV care outcomes. When counseling patients about disclosure, with the goal of improving HIV care outcomes (e.g., retention in care), helping patients identify a family member to share their HIV status may offer equivalent benefits to wider disclosure. We also found the religious barriers for HIV disclosure. The threat of losing the love and protection of family or religious standing within a cultural context where family and church are central and act as a buffer against racial and socioeconomic oppression, may be particularly untenable for Black MSM. Interventions occurring at multiple levels and within multiple contexts are needed to promote HIV disclosure and improve clinical outcomes in the Black MSM community. Similarly, structural interventions targeting religious groups, schools, and health care systems are needed to improve the health outcomes among Black MSM. Community engagement and using community-based participatory research methods may facilitate the development and implementation of culturally appropriate HIV interventions targeting Black MSM.

For the impact of HIV disclosure on HIV care continuum outcomes, we observed that HIV disclosure as a facilitator for linkage to care and retention in care through social support obtained from disclosure confidants, which is partly supported by a recent systematic review study (Yang et al., 2023). This study provides incremental evidence of the positive relationship between HIV disclosure and linkage to care that has not been extensively investigated. It also supports prior studies that reported an association between HIV disclosure and retention in care (Anderson et al., 2018; Chaudoir et al., 2011; Hodgson et al., 2014). If patients have not disclosed their HIV status to family and friends due to perceived stigma, efforts to hide their disease may impact consistent care-seeking behavior and they may not be able to benefit from potentially available social support.

Our study has several limitations. First, our results were based on a relatively small convenience sample collected from one geographic area (one community-based organization) and thus, may not be generalizable. Second, our results may be biased because all the Black MSM were recruited from one HIV-specific community-based organizations and were engaged in care, so it may not be generalizable to those not receiving any care. Third, we did not capture adequate information between HIV disclosure and ART initiation and viral suppression to draw any conclusions. Further studies are warranted to explore the impact of HIV disclosure on ART initiation and viral suppression outcomes.

Despite these limitations, our study provides some insight into the complexity of HIV disclosure process and its relationship with HIV care continuum outcomes. Most of the themes reported here were discussed across the in-depth interviews and many were consistent with prior research. This finding suggests that the disclosure of HIV status may facilitate access to care or allows an HIV patient the freedom to pursue their HIV care without concealment. This finding has important implications for developing interventions for Black MSM that include counseling to help identify family members to whom HIV status can be safely disclosed. More research is needed to better understand the basis for this association and to evaluate if disclosure could potentially be a surrogate of another underlying measure such as stigma, depression, or represents social connectedness. In addition, community engagement and using community-based participatory research methods may facilitate the development and implementation of culturally appropriate HIV interventions targeting Black MSM (Owens et al., 2021).